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My Brother In Law and Metastatic NeuroEndocrine Prostate Cancer

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Posted 6/9/2024 12:41 PM (GMT 0)
My brother in law was diagnosed with early stage prostate cancer about 5 years ago, treated with conventional photon radiation at a well known and highly thought of hospital in central Florida, where he lived. Fast forward to four weeks ago. He had been having a bunch of other problems and ultimately had first a CAT scan and then an MRI. The results showed metastasized cancer, presumably from his prostate and surrounding areas, all over his body. Biopsy determined it was neuroendocrine carcinoma. which according to what I had since read, can happen to 10-15% of the cases of metastasized prostate cancer. His was very fast growing. Three weeks after diagnosis, he died. The last 10 days were spent in a hospice center due to almost unmanageable pain and general confusion. He was 74 years old.

As you can imagine, his quick death after diagnosis has left his wife, my wife (his sister) and myself in somewhat of a shock. We were with him his last few days and I can testify that both hospice and death are blessings to be grateful for. Just wondering what the Forum's experience with neuroendocrine prostate cancer has been?
Posted 6/9/2024 1:07 PM (GMT 0)
Skeeter, I am sorry to hear about your brother in-law. Hopefully others can answer your question. Was your brother in-law following up with a urologist and having regular PSA tests?
Michael
Posted 6/9/2024 1:44 PM (GMT 0)
Neuroendocrine PCa is difficult to treat as it is often not sensitive to ADT, radiation or chemotherapy used for PCa. Surgery is usually the preferred treatment method when the initial diagnosis is neuroendricine, from what I have read. There are some that theorize that some PCa strains when treated will mutate into neuroendocrine.

You say it was found from the biopsy. Was it the original biopsy five years ago that led to the diagnosis of PCa? Or was there a biopsy of Mets found from the CT and MRI four weeks ago? Do you have any information regarding his PSA testing following his radiotherapy?

Our condolences and may he rest in peace free from the ravages of cancer.

I had a client who was dx and had surgery at age 55, followed by 16 years of regular non-detectable PSA. Then it started increasing and he was started on ADT. A year later a met was biopsied showing neuroendocrine PCa and he subsequently passed away within a year as it continued to grow inspite of the treatments including taxol. He was otherwise very healthy and a daily biker/runner.
Posted 6/9/2024 2:24 PM (GMT 0)
Sorry to hear about your BIL. Everything was seemingly okay, then everyone was blindsided.

Neuroendocrine PCa is probably feared more than anything else in PCa, especially for those in long-term management of a recurrence. To make matters worse, PSA isn't always an indicator that there is a lot going on until there's no chance (instead of a poor chance) to manage neuroendocrine
Posted 6/9/2024 5:36 PM (GMT 0)
According to his wife, his PSA had not had much of a climb, and yes, he was getting it regularly checked. He started having a lot of pain in his back and trouble walking, which was the reason for the CAT/MRI. The biopsy was after the scans of a few weeks ago. Obviously no real idea as to how long the cancer had been working on him, but as advanced as it was, had to have been for awhile, even though NeuroEndocrine is a fast growing cancer in cases of metastasized prostate cancer.
Posted 6/9/2024 6:08 PM (GMT 0)
Skeeter, I did some more reading about NEPC. One of its hallmarks is the lack of meaningful PSA expression. Thus the NEPC was busy working and spreading without the usual PSA warnings normally associated with advanced PCa. It is also very aggressive and can advance quickly. The 10-15% figure you note is related to men who had advanced disease and treated with ADT. Further, the longer one is on ADT, the more likely NEPC will develop, according to several studies. The theory is that some strains of adenocarcinoma, the nearly universal type of cancer that is of the prostate, will mutate to NEPC as an evolutionary response to ADT.

What is known as “du novo” NEPC means that NEPC was present at the first diagnosis before any treatment. Only about one-half of one percent of PCa is so identified, very rare. So if your brother in law wasn’t advanced to begin with and didn’t use ADT, or only a very short course, then he may have been one of the very rare du novo situations. Since the initial biopsy only samples less than 1% of the prostate, it could be very easy to miss.

Skeeter, also glad to see you doing well following treatment in Bloomington. When I was a student at IU, the Proton Lab was very top secret and hidden away from general sight. A lot of rumors were always swirling about what was going on there. This was before the clinic opened several years later. As I recollect, you may have been among the last patients to be treated as the clinic closed several years ago.
Posted 6/10/2024 4:30 PM (GMT 0)
Skeeter, I have no knowledge, but very sorry for your loss for you and your family
Posted 6/10/2024 6:35 PM (GMT 0)
My condolences to you and your family, Skeeter.

Djin
Posted 6/11/2024 1:48 PM (GMT 0)

JNF said...
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Skeeter, also glad to see you doing well following treatment in Bloomington. When I was a student at IU, the Proton Lab was very top secret and hidden away from general sight. A lot of rumors were always swirling about what was going on there. This was before the clinic opened several years later. As I recollect, you may have been among the last patients to be treated as the clinic closed several years ago.

JNF, thanks for the words of encouragement and background re IU. I believe that the IU proton center shut down within a couple of years of my being treated there. There were various reasons as to why this occurred, but the most reasonable was that the cyclotron was very old technology and required a enormous effort almost daily to keep it operational. The cost of upgrading their equipment was more than IU Health wanted to spend, and thus the IU Health Proton therapy Center disappeared. A shame, imho, if for no other reason than the multitude of children that were treated there from all over the country. Inasmuch as I am an unapologetic cheerleader for proton radiation treatment, it is gratifying that although IU disappeared, many more have come online, and more yet will come online in the years ahead.

I have done well. I credit the proton therapy I received, but also the incredible care that I received at IU. For a Kentucky boy (and big UK fan) It is a big thing to admit, but I never hesitate to do so. The care I received at IU Health was the best I've ever experienced, and also the best I've ever seen experienced by any member of my family. My 3 1/2 months in Bloomington was an incredible experience, and 13 years later I remain cancer free. I will always have a warm spot in my heart for IU Health, and if I ever do have a recurrent problem I will be making a drive up I65 to have it taken care of.
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